Further treatment or not after hysterectomy

Hi Starlight12  and welcome to the group

Sorry, I haven't been in the same situation so can’t offer any advice, but wanted to say hello anyway! 

I think it must be very hard for you to make this decision without having a recommendation either way, or concrete evidence that it would be beneficial. It’s a very personal decision that only you can make for yourself but maybe there will be other ladies who will come along to share their own experiences of having had to make such a choice. Have you been given some time to decide? 

Sarah xx

Hi Starlight12,

Like you I had a radical hysterectomy in September and during the surgery they found I had a positive lymph node which meant I needed post op chemoradiation. I didn't get a choice in this really as it was the only obvious thing to do. I live in Italy and here they described it as sterilizing the area to give me the best possible chance of not having further problems in the future as the lymphatic system is complex and leads to higher levels of recurrence.

The radiation blasts the area and the chemotherapy works in conjunction with the radio to ensure that any hiding cancer cells are killed. I'm now waiting for my first post therapy check up after three months. Although the therapy was very intense, it's quite short lived (usually about five weeks long) and at least you know you have done everything you can to lower your risk of further problems.

I hope this helps,

Lulabell

Hi Starlight12

I was intially staged at 1B1 (new Figo 1B2) and had a radical hysterectomy.  Post op histology showed peri-neural invasion, lymphovascular space invasion and a close margin and I was restaged to 2A1.  I was advised to have chemo-radiotherapy; there was no suggestion about me needing to make a decision and I went on to have the treatment.

Two or three years later I was bemoaning all my long term side effects of treatment to my surgeon.  I'm not sure it helped me to know retrospectively, but the surgeon said that my case had been a topic of heated debate at the MDT meeting.  Apparently my surgeon considered that he'd removed all my cancer but he said he was over-ruled by the chemo-radio team. So it seems that, although the reasons for me to have chemo-radio were stronger than yours, there was still a very good chance I would have fine without.

I'm not sure how much difference it makes having a lot of knowledge in this situation; not even the top expert can guarantee outcomes. With hindsight I think would have liked to understand the statistics for my chances for recurrence had I not had chemo-radio. If you're interested in that you could asked your consultant and/or, if you like analysing, you could do your own risk assessment. I googled on 'sedlis criteria' and one or two recent studies came up which might help with thinking things through?

I wish you all the best with your decision making.

Hi Beth2 

I’ve done some research myself on this and there is surprisingly little actual data available on LVSI and the benefits of chemoradiation. I think personally, because I had a recurrence so soon after being NED and the fact that microscopic cells can’t be seen on a scan, I would be doing everything in my power to try to avoid it coming back or spreading to lymphnodes which can make it more difficult to treat.

I would agree that it’s worthwhile researching the information which is available from peer reviewed studies and asking more questions about risks and benefits before coming to a decision. It makes it more difficult to decide when the issue isn’t clear cut, and I’m not a fan of the patient being left to make a decision without sound reasoning-we are not the experts here. 

Sarah xx

To lulabell, Beth and Sara,

To lulabell, Beth and Sara, I am always so touched my woman's replies here and in awe of the strength you all have.

I still have some reading to do about chemoradiation and the risks associated with it. I feel as if I have to decide between recurrence which may or may not happen and risks of treatment. 

I feel like I am in charge of my own destiny here. 

I am waiting for an epiphany and just pray I can settle on decision and live with the consequences. 

I wish you all the best

Starlight12

Hi Starlight12 

I think the critical thing is being comfortable with your decision-it’s a big one to make. You are right in saying recurrence may not happen, and hopefully it won’t. But it’s the not knowing that’s the issue. There are risks associated with every treatment, and medics are obliged to tell us everything that may happen, but again it may not. Some ladies sail through the treatment with no ill effects at all, and no lasting after effects. 

I’ve just been in hospital for a time and needed to have a procedure done. The dr was obliged to tell me when I was signing the consent that there was a 1% chance of death during what I was having done. Very highly unlikely but still possible so I needed to be told. 

I would only caution to concentrate on reading reputable sources for information on chemoradiation. There is a lot of misinformation out there and downright lies-there are people with agendas to push to frighten women into not having any treatment, unbelievable as that may sound.

I hope you can come to a decision that you will be happy with once you have done some more research and are aware of all the pros and cons to going ahead or not.

Sarah xx